fuck cancer

I had no idea about any of this mate. Hope you and B get through this. Thinking of you pal and hit me up on fb anytime you need to vent.

Mark what you (and NickB) posted has helped make sense of what just happened. Today there's been a procession of doctors, nurses, pharmacists coming to see B and it's been a different world compared to Saturday. Things are being done. More importantly B is not freaking out that she's being left in hell.

NickB - I appreciate the offer - we have so much crap that we have to hire a removal firm to get us moved so I don't think/hope we'll need any help, I've learnt from the move over here so I'm going to hire 3 guys to do it, at least this time the lift should be working, although I've just jinxed it. Moving over here it was 2 guys and me and my mum carrying shit up 4 flights of stairs for 6 hours. But that was without a lift.

xpost cheers Mr Slop

all the best to you & yr wife colonel, I am glad that things are progressing finally for her. what a nightmare

Fuck cancer.

Jesus Fucking Christ.

The complete fucking moron doctor who removed my wife's port yesterday because it was malfunctioning used metal-tipped stitches for no apparent reason (they didn't use this kind when it was put in) and she was due to have an MRI scan today. Narrowly avoided being burned because they spotted it just before the scan. What the FUCK. So now we have to wait til the stitches can be removed before she can have the MRI to determine if the chemo is even working. On top of that when she has radiotherapy she'll have to travel to another hospital 40 miles away, with no option for transport to be provided and we have no car/driving license, so it's 2 hours each way, 2 taxis and 2 trains. The NHS is completely fucked.

It was the same fucking department even. Radiology put the metal stitches in the day before radiology were due to do an MRI. So can't even blame it on interdepartmental communication failure. Just incompetence.

Jesus. That is so fucked up. It never stops does it?

I'm two months into a severe hospitalization of my mother (not in uk) and I've learned to constantly be on the lookout for errors. Them moving her to a diff department while she has an appointment with a doctor somewhere else at the exact same time; preventing the doctors to give her medication she isn't supposed to be given and explaining why. Stuff like that, small corrections. That already puts me on edge every time I'm there, but it's manageable and generally I'm happy with treatment and care, and with the fact that there is a general willingness to listen and go the extra mile.

With you though, I can hardly imagine how you must feel at this point, with everyone in the bloody system failing you in so many ways. It's distressing and quite frankly deeply shameful to see people who need to care for your loved one fuck up this much.

And why can't the hospital arrange proper transport when she has to go to a different hospital? That alone baffles me.

I've no help to offer, but feel you on how on edge you already are. Having to deal with this complete incompetence blows my mind. I'm sorry Colonel but I'm thinking of you and wish you both the very best.

Thanks LBI. I feel guilty complaining about the NHS because I know how stretched they are, and most of the nurses and doctors have been caring and helpful, but the continual battling we have to do and watching my wife struggling with getting any motivation to try to get better when they put these obstacles in the way is very draining. Of course I mostly just complain when things go wrong so you don't hear about when a nurse sat and chatted with my wife and made her laugh.

I never seem to find any energy to post about anything but crap things going on in my life these days so I apologise profusely to ILX for using it as a dumping ground but I'd rather mouth off here than to the diffuse group of actual friends and family members and various acquaintances/people I used to work with that I have on FB. At least most of you bastards don't know who I am so it feels less embarrassing somehow.

No need to apologized for anything man. Ilx is a fine dumping ground, many of us are here by choice, remember :) Seriously, no problem at all.

Keep thinking about this one thing: your wife is admitted in the hospital. How can they *not* be responsible for arranging appropriate transport/taxi to and fro a different hospital if she needs to be there for something related to her treatment? I just cannot get my head around this.

Ah, she's not currently in the hospital - they discharged her last week. She has to go in every day this week but Tuesday, but she goes home after - it's all outpatient stuff, even the operation to remove the port yesterday - she was sedated but I was able to accompany her home in a taxi. She has to make her own transport arrangements, which is OK if the hospital is 3 miles away but less OK if it's 40.

venting is an underrated but imo important part of dealing with all of this - better you let it go here than hold it in & unload on some unsuspecting someone irl <3

LBI otm basically.

It sucks that there isn't a service that could help with transporting her, public transport in her condition just seems like too much to deal with :/

Yeah, too much to deal with. Hope someone in your circle of friends or family can help out and take you both there.

CP that stitches thing is so awful, it's the sort of thing I'd really let get to me. Can you politely but assertively talk to anyone there who might go the "extra" mile (i.e. do the basics) to look out for this sort of thing?
Don't be afraid to ask friends/family to help out with transport. I'd happily do it if I was available/near you? I think one of my former colleagues used to volunteer for some org that drove pensioners etc around for appointments, is there anything like that near you?

Nothing to do with cancer but I've had some hospital appts recently and trying to ascertain basic details like what day the consultant could do it and when I needed to be there did my head in, I wasted 50 quid on childcare because two different people told me different incorrect things.

it's really fucked that when you or someone you care about is at their most vulnerable, you can't trust doctors and nurses etc to do their job. being on edge, constantly having to second guess everything, just adds so much stress to an already stressful situation. i live in the US now, which has it's own set of healthcare-industry problems, but the socialized healthcare in new zealand, where i'm from, is just completely fucked. pretty much everyone i know has had some kind of problem with getting healthcare that is timely and professional. i posted about this a few years ago when it was happening, but my little sister got totally fucked over by the hospital in our hometown - and there was no recourse bc the reality is that when you're fighting bad health you don't have the energy to pursue formal complaints. my sister has permanent damage from a badly-placed intubation, has to have surgery on a regular basis to keep that damage in check, almost died due to misdiagnosis (which led to a stroke that has also left her with permanent weakness on her right side), and a whole host of other bullshit caused by inattentive medical care. it fucking enrages me, and having been on the sidelines and watching my sis go through that, it enrages me on your behalf, CP, that you and your wife are going through this totally unnecessary bullshit.

i mean, fuck cancer, but also fuck the healthcare industry.

My dad's just been diagnosed with lymphoma. There's just no end to this shit.

Oh M, im so sorry. Hang in there pal. If you need to chat you got my # or on fb etc

holy shit.

someone very close went in for removal of cancer on his nose. it turned out it was way more of an issue than at first though. he has now lost everything from eyebrows to the tip. this is devastating. i don't know what to do. there is nothing i can do. it is fucking frightening.

this on top of my mother fainting and being taken to the hospital and them mis-reading the blood charts, giving her 2 blood transfusions and a potassium injection. almost killer her bc someone wasn't paying attention. they were about to put her under the knife for a bone marrow operation wtf.

i talked to him, he didn't sound that different, and his spirits were up, which is great. the past few weeks have been a very trying time for much of my family. it is important to remind each other that we are there for each other.

Important indeed.

<3 to u Adam

woah Adam. Best wishes.

My mom died last week from a really aggressive form of pancreatic cancer. Age 57. She could be a terrifyingly intense woman, but still my mother. Wasn't expecting that at all. That's now a cancer hit rate of 75% on my mom's side of the family through a couple of generations. So yyyyeahhh, I think it's time to quit smoking.

Larry, i'm so sorry.

Best to you and your mom, Adam.

larry im so sorry.

thanks for the kind words, all. they went in for surgery today, the doctor was optimistic, it all feels very unreal.

it is terrifying how many stories of hospital error there are, specifically in this thread.

Thanks Dr. Morbius and Adam

Very sorry for your loss. Fuck cancer.

just an update: surgery (2 of them) went fine and he is actually growing new hairs from his new nose! a few more surgeries to come but so far it is promising...

ofc they got a bill from that botched operation where they nearly killed my mom, charging them for the unnecessary blood transfusions that were entirely the fault of the hospital. someone's gonna get sued...

Another update: both my wife and my dad had to stop their chemo early because they had too many side effects. But both of their tumours shrank significantly before this.

My wife had surgery yesterday, she is in hospital at the moment. She has traces of MRSA so they are keeping her in til Monday as a precaution. In a few weeks she will start radiotherapy. This is going to be a logistical nightmare because they do not offer radiotherapy where we live, she'll have to go 35-45 miles every day for 3 weeks to another town (not decided which yet) and we have no car.

My dad has another week of radiotherapy to go. He has to have a heart monitor fitted because he had some heart trouble as part of his reaction to chemo, but after that no more treatment. Then 3 months wait then more tests to see if he is clear of cancer or not.

This is going to be a logistical nightmare because they do not offer radiotherapy where we live, she'll have to go 35-45 miles every day for 3 weeks to another town (not decided which yet) and we have no car.

the chaos of an evil lump is beyond belief until you experience such shyte ..
you have my heartfelt love CP.

thanks Mark

Cancer still won't fuck off. They didn't get it all, so instead of radiotherapy there's another 2 months of chemo starting beginning of April and THEN radiotherapy.

Goddamnit. Very sorry Colonel. Wishing you two all strength and all the best.

Damn. Love and best to you both indeed.

best to you from a chemo vet.

And now my wife has MRSA and has to go back into hospital, again.

The surgeon is blaming the oncologist for sending her for mastectomy too soon after chemo so her immune system was still too vulnerable. We're supposed to be trusting these people, tbh it's pretty unprofessional imo to say that, it's not like the surgeon didn't know she was having chemo and she didn't say anything at the time, just sounds like she's trying to cover her own arse.

So now my wife is probably going to be stuck in a ward with a load of incompetent nurses sitting around doing fuck all again, why is it always a Friday when she has to go in, seems like they put all their worst staff on at weekends. The ward she was in last month there was an old woman with dementia who'd had an eye taken out after she fell and skewered it on something, they had a nurse sit with her to keep an eye on her, she kept trying to remove the bandage and stick her finger in the eye hole and the fucking useless nurse just sat playing with her phone and let her do it. My wife had to keep trying to get the nurse's attention to point it out.

JFC. Sorry CP.

Sorry CP, you're really being put through it all. That's terrible about the nurse/surgeon. Once that trust is put in question it multiplies anxiety x10000

If it's anything like US hospitals that person was probably not a nurse though they are happy to have patients think so

CP I'm so sorry you're going through this

sending u good thoughts and some vintage punk rock vibes, CP

My mum's cousin has cancer now too. Fucking cancer everywhere. What are the fucking odds. 4 family members in less than 12 months. First cousin once removed might be stretching it I suppose.

sorry that you're going through so much shit cp. hope you haven't got too far to travel between home and the hospital

our best to you all in this horrific situation M

I'm reminded today of small mercies. B is between treatment at the moment. I can't even imagine what it would be like if we were having to deal with the hospital with the computer system down. Even this makes me feel guilty that there are people out there facing utter confusion.

Fucking incompetent bastards :(

Patient transport supposed to be taking my wife to radiotherapy. They fucked up the appointments so nobody came this morning. My wife phoned up PT to see what was going on and they said they'd sort it out and send someone. Nobody came. So I call PT and after being on hold for ages they can't find anything on the system for today still. They have to speak to supervisor and call me back. Turns out the person my wife called this morning fucked it up and put tomorrow instead of today. What the fucking shit is wrong with these cunts. So no radiotherapy today and we'll have to try and sort it out with the hospital, I guess they'll put in an extra appointment at the end of the treatment? There's no fucking end to this is there.

I'm sorry for you and anyone who suffers incompetence in these circumstances, Colonel.

Cancer fucked. My wife has just finished her last dose of radiotherapy. That's the end of her hospital treatment - she'll be taking hormone pills indefinitely.

Mixed emotions today. Happy obviously, but worried about the future. Odds of reoccurring are high. 5 year survival is 40%.